Tongue Tie — The Bump
May 2016 Moms

Tongue Tie

Hello! I've been a long time lurker so I apologize that this is my first time contributing to the board but I'm wondering if anyone has any experience with a problem my LO and I are having. 

I recently saw an IBCLC who told me LO has a submucosal tongue tie, so it is not visible and doesn't look like a classic tongue tie. LO is almost 10 weeks and I am still in a lot of pain (I use a nipple shield because it hurts too much without it), he has difficulty eating efficiently, and is not gaining weight as quickly as the pediatrician would like along with a few other problems.  

My question is does anyone have any experience with this type of tie? Did having surgery help with BF? I was warned that having it worked on may not immediately address our problems and it may take some time. We are already supplementing with formula and expressed milk. I'm trying to decide if it is worth fixing or if I should give up BF. I would hate to give up because we've been working so hard to make this work. 

Sorry this is so long. Thanks for any help!

Re: Tongue Tie

  • I don't have experience with your exact issue, but LO did have trouble with BF- I overproduce so he didn't get enough hind milk and nursed too long so he burned up more calories than he was taking in. As a result, I transitioned to EP, which has worked well for us. I had wanted to move back to BF, but LO repeatedly rejected it for the bottle.

    The decision on what to do is very personal. I think you just have to access your situation and values to determine what's most important to you.

    As a note, my understanding is that tongue tie is typically the go to explanation for BF issues. A lactation consultant tried to convince me that was the issue, but when I had a Ped check it out, they said there was no tie. I'd just recommend getting a second opinion before proceeding, if you decide to go that route.
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  • I'm not sure the technical name for the tongue tie my son had, if it was classic or what. ...I'd have to check his paperwork. Regardless, I had severe pain breastfeeding and cracked and bleeding nipples and what the LC called "creases" above my nipples which were basically scabbed bruises from where baby's mouth ended up dt the tie. My LC is also a pediatrician so I felt confident when she suggested the clip. My son was only 2 weeks old at the time and  did ask another ped for his opinion and he also recommended it.

    The procedure took less than a minute and my son resumed feeding immediately without pain . I don't remember if it helped immediately for me since I still had to heal,and also tried other breastfeeding positions (particularly football hold) but he's 12 weeks now and feeds well with no pain for me. I had posted on facebook asking for others experiences and the feedback I got was all supportive of getting a clip, or stating that they gave up BF as a result or the child had some speech issues later since they didn't clip. That was just the feedback I got so I'm not making any sweeping statements about what would happen if you did or didnt, but for me it helped tremendously. 
    Me: 29  DH: 31, married 6/21/14, TTC since 7/14
    BFP #1 EDD 7/17/15, MMC 1/9/15 @8w
    BFP #2 4/3/15= ectopic treated with methotrexate 5/1, YET ruptured 5/18/15= One Tube Wonder!
    2 Cycles of Femara, Ovidrel, & Progesterone= BFP #3 DS born 5/17/16
    TTC #2 March 2017 (initially med free) 
    BFP #4 8/14/17 *natural cycle* EDD= 4/25/18, MC @5-6w D&C 9/22/17
    BFP #5 12/29/17 w/ Femara/Ovidrel/Progesterone/Synthroid, EDD= 9/11/18 found out 1/18 ITS di/di TWINS!!!
    DS and DD born 8/21/18 
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  • I agree that you should get a second opinion.  My baby had a classic tongue tie and we had it clipped at 9 days. 2 lactation consultants at the hospital, plus my OB suggested having it dealt with ASAP to avoid dealing with it later.  The Pediatric ENT we saw also explained the benefits of having it done, so we just did it.  Sorry, I know you said it was a different kind of tie, so can't help you there, but getting more than one opinion from a professional is always helpful.   I hope you get to a place soon where it's not painful for you anymore!  I remember those first 2 weeks were tough when my baby had a shallow latch.  It wasn't an overnight improvement, but a few days after the clip I wasn't in pain anymore.

  • My son had a lip tie and posterior tongue tie that we had lasered. Posterior tongue tied are hard to see but I'm unsure if they're the same as the type you have mentioned. For the first 2-3 weeks after breastfeeding was actually worse as he wasn't used to his new mouth and hated the stretches we needed to do to ensure the ties didn't reattach. After that he got way better. He got the procedure done at 3 weeks and was feeding like a champ by 7 weeks. The in between time was hard - I mostly pumped and bottle fed him. But overall I'm very glad we did it as now I have no pain and his latch is good. 
  • Thank you so much for your input ladies! I decided to try some bodywork (craniosacral therapy) until I can get into the pediatric dentist in my area who specializes in lip and tongue ties for his opinion. I am hoping everything works out. 
  • Hey just want to say that my daughter had to have her tie clipped twice and even then it took another couple weeks before it felt better. So don't be discouraged if it doesn't improve right away. There was a time when I seriously considered giving up breastfeeding and now I have almost zero pain. 
  • Thank you for sharing that with me! I feel like knowing there is a reason for the pain and knowing that it will get better eventually is really motivating me to keep going. I am definitely looking forward to pain free nursing!
  • My son (who is now 2) had a tongue tie as well. Breast feeding was excruciating. We had it clipped on day 4 but my pain persisted. I stuck with it and kept trying because I was committed to breastfeeding and thought it had been "fixed". I ended up with lots of plugged ducts, mastitis, and constant pain. Finally at 5 months, a LC told me he was still severely tongue tied and the first procedure hadn't worked. We saw and ENT and had it fixed again. I saw drastic improvement immediately. He was sore and fussy for a day or so, but recovered fine. I was able to nurse him until 15 months with no further problems. If you'd like to breastfeed, I'd really encourage you to get his evaluted and try snipping it. I wish I would have been more informed about it earlier on. And beware, it usually runs in families. I just gave birth to my daughter and she was TT as well. Luckily, we knew to look for it and they fixed it correctly at birth. Hang in there, mama! It can and will get better. 
  • Thank you for sharing your experience. I'm sorry your little guy had to go through it twice but so glad to hear you were able to have a successful breastfeeding relationship. 
  • My daughter has an anterior tongue tie and could not latch at all. I had to stop breast feeding because I couldn't find anyone to perform the procedure. I received multiple referrals to get it clipped, but the ENT refused, saying he doesn't clip before 6 months. It seems to have gotten slightly better on its own but I am worried now about speech later on. I wish I could have found someone who was willing to help.
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